Marchese Family: Stomach Flu Funk!

Gavin was born in January 2010, a seemingly healthy 6+ pound baby boy. He took us by surprise a bit, as we had only been on the "waiting list" for 2 weeks! Gavin had rough beginnings- formula allergies, chronic fussiness, frequent ear infections, and finally diagnoses: Cerebral Palsy, Eosinophilic Esophagitis, and severe Sensory Processing Disorder. You'd never know these days! He's symptom free of CP and in remission of EoE! His SPD continues to give us a wild ride, but there's no sweeter boy than mine to make the journey with!

Special Needs Thoughts...

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

-Emily Perl Kinglsey

Friday, April 2, 2010

Stomach Flu Funk!

Miraculously, I am the only person awake in the house at 5:30 on a Friday afternoon...

The stomach flu has stormed through the Marchese household and taken both Grace and me hostage. Gavin, Felix, and Mimi have seemed to weather the storm thus far, but it's not over till the fat lady sings, and I'm not singing! :) The last 4 days have been filled with pediatrician visit after pediatrician visit, I literally went 3 times in 1 day!! After getting a virus diagnosis, I suddenly came down with the same symptoms- and they weren't pretty. In the last two days I've drank 2 liters of Ginger Ale and managed to eat 5 crackers- it's truly a great diet plan, but I feel like I have the world's worst hangover because I'm still uber dehydrated! I can't even imagine how poor Gracie must feel- she just can't decide if she wants to lay down, sleep, be held, play.. and I haven't seen a "real" smile in almost a week. Poor baby! On top of that, we've got her molars coming in- the bottom left has come through and both the bottom right and upper left are starting to. I guess when it rains it pours, eh?

We never did make it to the Disney on Ice show. We had to give up our tickets, because Grace was too sick and I didn't want anyone else to get this monster sickness, especially other immuno-suppresed kiddos. No fun!

Off to bathe my babe- hopefully she'll feel a bit better. She's down to 17 lbs 10 oz wet and with clothes on... NOT a good sign... Prayers, please!!

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